[Mark]

It saddens me that this experience is happening to others with ALS or those in wheelchairs.

I guess I’m very fortunate in that my social friends have remained my social friends. I too was a socialite, I love being and talking with friends. Now I confine myself to my lounge chair and a friend will come visit, pull up another chair next to mine and we chat.  Due to Covid, we are very cautious, no hugs or kisses. Many of our friends are couples, so they come as couples and my wife and I enjoy the company.
We limit the visit to an hour because I’m also using a BiPap to help with my breathing. I’ll take it off, chat a bit and when winded, put the mask back on. Once a friend was insulted when I asked him to leave after an hour, of which he was for warned.  After he pouted for a couple of weeks, he finally understood that it wasn’t about him, but about me.

I wish the same good experience was your experience.  We are going thru an awful enough lifestyle, friends should be more caring and giving.

My wife has a hard time when asked How’s Mark doing? There is no good answer, but the fact that they ask, means they care.

We have a few caregivers and 1 in particular thinks she knows how everything should or shouldn’t be. She has no clue how I feel or what I’m experiencing or my fear of falling etc.  and she is studying to be a nurse. You may ask, why do we have her in our home. Well basically she does a good job and we are at her mercy-it’s not easy finding a response caregiver.
I didn’t mean to go on and on and I thank you for listening.

I hope your friends realize you are as human as they are and ALS and what it does to you, shouldn’t make any difference in who you are as their friend.

[Mark]

I watched the Solos story with Anna Hathaway and it left me with nightmares.  There was nothing positive about it.  Yes, she loved her mother who was stricken with ALS, so very much that she didn’t have much time to spend with her mom because she was so absorbed trying to go into the future to find a cure. I also won’t give the ending away, but I was devastated with the story. I chose not to watch any more of the Solos episodes.  Depression is not my idea of enjoyable TV watching, since TV watching is mostly all I have nowadays.